Good news. And yet…

Yesterday was my most recent CT scan. As I mentioned before, I’m slated to have scans every three months for a year.

I prepare myself for the waiting, and yet I still find myself bewildered by the actual experience. In situations like mine, appointments are more suggestion than commitment. It’s the trade-off for accessing a world-class specialist, and for him offering to review your raw test output with you in real time, same day. It’s the knowledge that a patient in my situation will wait pretty much as long as is required to get whatever answers and comfort are available.

There is much variety within the waiting. Am I waiting in the wrong place? Did I arrive on the wrong day? Did I fail to prepare? Or is someone simply out to lunch?

Do I risk adding to my waiting by pointing out the waiting? Or is speaking up essential to ending my waiting?

Although this was my third time seeing Dr. T, I’m still figuring out his systems. Whereas my surgeon was with one hospital, Dr. T is with another. Everything I learned dealing with my surgeon is useless now.

Additionally, Dr. T changed assistants between appointments two and three. When I arrived for scan 1/appointment 2, I filled out forms and sat in one radiology waiting room for twenty minutes before a receptionist told me that I was actually supposed to be in a different radiology center in a different hospital building a ten minute walk away.

For scan 2/appointment 3, I made a point of asking assistant 1, via email, about the location–which was how I learned that assistant 1 had moved on. Assistant 2 seemed surprised by my existence much less me having an appointment on April 18. Great.

Assistant 2 did the follow-up that Assistant 1 apparently neglected. Namely SCHEDULING MY SCAN AT ALL.

Now, if this were, say, a routine dental cleaning, it would not be a big deal. But I built my work and biz travel schedule around this appointment and more importantly, my in-demand specialist who usually only sees patients in the office one day per week. To assistant 2’s credit, she did get radiology to squeeze me in on the appointed day.

So there I was, eager to get this mess of a day over with, showing up at 1p for my 1:20p appointment. I double-checked with the receptionist that I was in the right place. YES! Success. But then I waited, and waited some more, in a packed radiology waiting room with Who Wants to Be a Millionaire blaring overhead on a TV I couldn’t even see.

At 1:45p, I pointed out that my appointment time had come and gone. Again at 2:15p, I raised the issue which is when I got the good news that I wasn’t going to be drinking the gross barium milkshake and that my 1:20p report time had been to accommodate the drinking and digesting needed for a 2:20p scan. Oh.

But they were running behind anyway. To appease me, I think, they sent me back to change into my gown. I got to wait in a new place. Still, it represented progress.

The scan itself was brief and once completed, I moved to a new waiting area near Dr. T’s office and then another in an exam room.

Each visit with Dr. T makes the wait worthwhile. At our first appointment, Dr. T picked up on my interest in medicine – beyond my own situation – and since then he has happily indulged my every question and even laughed at my jokes. I’m grateful for the way he treats me as if I’m part patient, part student and part daughter.

At this visit, he pulled up my CT scan images and talked me through his process of evaluating them, what he hoped to see and what he did actually see. He has shared with me how he determines if a spot is a blood vessel or something in need of further investigation. He has studied my liver and kidneys, and complimented my gallbladder, noting that while it often swells with bile after a few hours of fasting, but mine has not done so. I suppose that’s good.

Dr. T took extra time considering the area where my left adrenal gland used to be, its former ‘nest’ now marked with medical clips no one had told me about before.

“If there’s trouble anywhere, it will most likely be here,” he notes before adding “but it looks good.”

We looked at my bones, my lymph nodes and the spaces in between. He measured the nodules on my lungs and pronounced them unchanged versus three months ago. I learned more than I did in two months’ worth of high school health class.

Dr. T will review the more official radiology report that arrives in a day or two, and share anything we might have missed. But the expectation is that I will continue with two more quarterly scans.

And then? Well, that is the subject of today’s reality check. After two more scans, the plan is for me to shift to scans…every four months instead of three. In my head, I had thought perhaps six months, so it was a jolt. But the tumor took a long time to grow so large (working theory: ten years) meaning patience is necessary.

And so it goes. Give me a day or two, and hopefully I’ll be able to turn my focus to the good news instead of the long road ahead.

Thanks for reading. xo
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